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Data-Driven Research Program
VICTORIAN COMPREHENSIVE CANCER CENTRE
Data-Driven Research Program
Linked Longitudinal Retrospective Health care continuum Secondary use Bottom-up
Data-Driven Research Program Data-Driven Research Program Linked - - PowerPoint PPT Presentation
Data-Driven Research Program Data-Driven Research Program Linked - - PowerPoint PPT Presentation
VICTORIAN COMPREHENSIVE CANCER CENTRE Data-Driven Research Program Data-Driven Research Program Linked Longitudinal Retrospective Health care continuum Secondary use Bottom-up Data-Driven Research Program Hospital Primary Care Population
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Data-Driven Research Program
Hospital Primary Care Population registries Clinical registries Registry trials Patient
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Contents
The data problem
p.7
Clinical
- Cardiology
- Dermatology
- Diabetes
- Oncology
- Clinical Trials
Population Health
- Cancer Registries
- Diabetes Registries
- Rare Diseases
- Screening Registries
- Quality of Life
Government
- Admitted Episodes
- Australian Cancer dB
- Bureau Statistics
- Death Dates/Cause
- MBS, PBS
Primary Care
- Diagnosis
- Medications
- Prevention
- Referrals
- Test Results
Administration
- Admissions
- Demographics
- Events
- Procedures
- Audit
In-Hospital
- Imaging
- Pathology
- Pharmacy
- Radiology
- Scheduling
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Data sharing framework
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Contents
Collaboration framework for researchers
Data sharing framework
p.9
- Evergreen agreement to facilitate multi-site collaborative research
- Ethics approval of BioGrid data linkage platform for each institution
and database linked
- Waiver of consent or opt-out consent for hospital data linked to
BioGrid platform
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Contents
BioGrid Members and Collaborators
p.10
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Contents
Federated solution for sharing data
Data sharing framework
p.11
- Federated data sharing platform with all data transfers and
linkages performed over secure encrypted network connections
- Probabilistic identity matching or deterministic cryptographic
hashing matching to generate record linkage keys
- Data access controlled and provided de-identified (coded)
- Data custodian retains FULL control over access to their data
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Primary Care Data
Patient Reported Outcomes Data
Hospital Administrative & Clinical Outcomes Data
Registries Data
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Primary Care Data
Hospital Administrative & Clinical Outcomes Data
Registries Data
Patient Reported Outcomes Data
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Tumour Stream Pts linked primary care Avg # appts primary care 12m pre dx Hospital Diagnoses Pts linked primary care Avg # appts primary care 12m post dx Breast 197 11.4 1,984 183 11.8 Haematology 178 13.5 3,033 172 15.2 Lung 169 15.7 2,711 154 15.1 Lower GI 133 12.9 1,432 128 13.6 Head & Neck 117 11.6 1,378 110 12.1 Urological 110 12.8 2,130 99 12.3 Neurological 71 10.1 900 70 13 Upper GI 67 16.1 1,307 67 14.5
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Tumour Stream Pts linked primary care Avg # appts primary care 12m pre dx Hospital Diagnoses Pts linked primary care Avg # appts primary care 12m post dx Breast 197 11.4 1,984 183 11.8 Haematology 178 13.5 3,033 172 15.2 Lung 169 15.7 2,711 154 15.1 Lower GI 133 12.9 1,432 128 13.6 Head & Neck 117 11.6 1,378 110 12.1 Urological 110 12.8 2,130 99 12.3 Neurological 71 10.1 900 70 13 Upper GI 67 16.1 1,307 67 14.5
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More than data…
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Victorian Comprehensive Cancer Centre Level 10, Victorian Comprehensive Cancer Centre 305 Grattan Street, Melbourne VIC 3000 Tel: 03 8559-7160 | www.viccompcancerctr.org Victorian Comprehensive Cancer Centre Ltd trading as Victorian Comprehensive Cancer Centre ABN 84 140 233 790 We acknowledge the Traditional Owners of the lands on which we work and pay our respects to their elders past and present.
Chris ris Kearney Program Man anager - VCCC Da Data Dri Driven Research Program, Univ iversity of
- f Melb
lbourne ch chris is.kearney@unimelb lb.edu.au Ge Genevie ieve Rosewall Project Officer, Bio ioGrid Australia lia enquir ires@biogrid id.org.au